Monday, March 5, 2012

Captain America's Kryptonite

This picture is from a year ago. I loved the speed demon blur of my nieces son running through the room.
This is our family's Captain America…who has now graduated to “Super C.”
When he was a few years younger, he would eat English peas like there was no tomorrow. They were for charging his super hero batteries.

(in the ORANGE cape)

In April and May, following this picture, he played soccer. He ran and jumped and crawled and kicked.

(March 2011)

By June, though, something was changing. He walked on his tippy toes. He did not want to run. He did not necessarily want to walk as much either.
In tears, my sister in law, his Annie (grandmother), expressed heart breaking fear that there was something amiss.  Local pediatricians seemed none too concerned.  Some suggested it was leftover from his parent’s divorce (several years earlier). Some suggested it might be because he had grown so tall, so fast, that his muscles were sore and catching up. His dad traveled to a specialist’s office 90 miles away and waited in the waiting room of a pediatric neurologist’s office, until they would give them an appointment.
Who would have ever imagined what journey was about to be traveled? The first appointment led to many tests. They led to more doctor’s visits. Was it neurological? Was it an orthopedic problem? No psychological residue from his parent’s divorce. Neurological test came back fine. Scottish Rites in Orlando came back with no orthopedic problem.
Unfortunately the symptoms were pointing to an obscure possible diagnosis. This led to an appointment with a specialist in Atlanta.
In August, entering Kindergarten, the school started having him go to lunch and to PE in a wheelchair.
More tests. A need for special approval from the major medical insurance to perform the blood test is required.
By October he was in a wheelchair for moving distances greater than a few feet. When not in the wheelchair, he walked only with assistance. Severe cramps would attack his leg muscles. His hands and arms would turn in by the end of the day, muscles having lost energy and muscles constricting.
A heart breaking prognosis is given.  
A longing, a need, a tearful visit to ones knees for a miracle. 
By Christmas, other than scooting around on the floor, all treks from one room to another was by way of being carried or in the wheelchair. His trunk muscles are now affected, and sitting up straight is tiring and difficult.
Mitochondrial disease is the diagnosis. Specifically Leigh’s Syndrome. For now, this is his Kryptonite (holding on to hope).
 Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth.  Symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. One in 77,000 births or one per 40,000 births for Leigh and Leigh-like disease . However, this may be an underestimate since mitochondrial diseases tend to be under-diagnosed and misdiagnosed.” I have read that the disease, including the less severe forms, is 1 in 4,000.
 The hope that the doctor was wrong, has turned into hopes and continued prayers for Divine Intervention.  Time is being filled with memory making moments. Moments to be relished, felt through and through, warm fuzzies to be engrained in every fiber of their bodies and soul.  And, at the same time, fighting for a grasp of this horrific reality, and fighting for financial help and trying to raise awareness.
Because the disease is identified by a specialist, and the symptoms of the disease are treated by various other doctors: Cardiologist; Ophthalmologist; etc…the disease itself is lost in the shuffle and mix of all doctors involved for treating whichever organ is being currently affected. Funding is needed to further research. And the only way to do that is to rally for the cause.
 Super C’s mom is holding up as well as can be expected. It seems she shines some truth on, "God will bring you throught it."  She is learning about the disease, she is learning how to live with and help Super C live with the disease, and she is fighting for financial assistance too. Her insurance will cover a new wheel chair: an electric option with the lumbar support to hold him upright. Unfortunately, insurance will NOT cover the cost to have a lift put on her car. The new wheelchair will be much heavier and bigger than the one he is now. She pays each doctor’s office what she can each month. She continues getting the vitamin cocktail and medicines prescribed.  She and Super C (and anyone who takes on the challenge) fight over taking the medicine. There is no sneaking it into food or drink. It taste awful…and sneaking it in means he will not eat for a day or two because it tastes so bad. Then there is weight loss…it is such a sad battle. Until he smiles big and lets out a laugh that does wonders for everyone’s hearts.

(with his new ramp . . . much easier!!!)
Super C’s mom now chooses to try to help and work together with other families to further the research being done, hoping for cure. She said one day recently, that it probably would not help Super C, but hopefully it would help someone else one day.
She heard about a walk to raise awareness, and is working on gathering a team together and heading to Atlanta for the walk on April 21st. It is the Energy for Life Walkathon, to be held at Centennial Park. It is only one mile, so those with the disease can participate, and anymore than a mile would be too much for many of those suffering the effects of the disease.

So I have a favor or favors to ask:
1.        Please, please, please add this family to your prayers. They gain so much strength from faith and the prayers being offered. My sister-in-law has had a very hard past week, as they continue to see less energy and longer naps and toll of this disease on this sweet 6 year olds body.

2.       If you are in the Atlanta area, or close enough for a day trip (hey, and you could fit a shopping trip in too!!), would you consider walking? Joining a team? Maybe see if there is an event in your area, if not close to Atlanta?

3.       Donate. This donation is not to an individual, but to the greater cause of supporting research to find a cure. To find a way to slow its progression, in the meantime.

4.       Walk and Donate? J

5.       Any and all of the above are welcome!!

For more information on the Walkathon:
Go to ENERGY FOR LIFE.  This link takes you to the Atlanta Walk. Search for team Super C
Or Click HERE…this takes you directly to Super C’s page 
You can donate, join the walk, or learn more about Curt.
Most of all, I know this is a long post, THANK YOU for reading it.  And thank you for whatever way God leads you. I have wanted to write about this for a month or so, but it is a tale that hurts my heart and makes my eyes leak J… and yet, every little bit of awareness, will help someone else that should find themselves walking on this path.


FancyHorse said...

I am praying for little Super C and for all the victims and families that a cure might be found, and soon!

Debbie said...

By the design of God, my Bible study passage this very morning was about intercessory prayer, very specifically for those who are sick. I feel very directed and called to pray for this precious child and his family.

I know in my heart that when I lift him with the name "Super C", that my God will smile knowingly.

James 5:14...

Gayle at Planet M Files said...

Oh, Lailani. My prayers are with Super C and his family.